Boston – IGF-1 Clinical trial

A clinical trial for Rett Syndrome called us over the weekend to let us know that a spot had opened up for Maggie. She’d be the 30th girl of 30 girls in the trial. Our emotions are all over the place. This is something we want to do. We need to do for her. When we were first diagnosed I called everyone I knew in Boston to try to help us get in – ultimately those efforts were unsuccessful and we got denied. But desperate to get some medicine to treat her, we were willing to do anything.

Now that things have calmed down a little bit and we’re faced with this decision, our perspectives have changed. We’re both scared: It’s a big decision. Do we put our 4 year old through the poking and prodding for science’s sake because it might help her? What if it doesn’t? What if we go through all of this effort and all we’ve done is wasted a year of the therapies that are helping her?

All of the cons drastically outweigh the pros – but there’s that one pro just staring us in the face: “What if it helps?”

Yesterday I found myself repeating to myself, “Must not get complacent. Must not get complacent”. It’s so important – because if I’m not constantly pushing for answers, I know I’ll just relax and accept. I don’t want to do that. I love her for who she is, but I know she can get better. I know the answers are close.

I’m not sure if the hesitation is complacency, or optimism that something better is close and I’m not sure I really know how to tell the difference.

I promise it isn’t a waste. Our thoughts when we started the trial this past Juky, if it helps even 1 girl then it helps us all find answers to the mystery of rett syndrome. To be honest, it is more work on the parents than the girls and Elizabeth loves the attention she gets from everyone there. Kind, compassionate people who want to make the experience less intimidating than it sojnds when saying “a clinical trial”. Good luck with the decision. Jenny has my number if you want to call.
Carrie